Background
Availability of information technology (IT) systems with linkages to population, cancer registry and health services databases has been identified as an essential criterion for implementation and evaluation of an organized cancer screening programme. Evidence from the Canscreen-ECIS project suggests that data on screening quality and performance remain limited.
 
Objectives
We aimed to explore system-level facilitators and barriers to the accessibility and use of process and outcome data within cancer screening programmes in Europe.
 
Methods
An online survey was conducted among stakeholders (screening programme coordinators/ managers, policy makers and IT system managers) in EUCanScreen participating countries.
The survey addressed legal frameworks for data management, data collection and IT systems, availability and use of individual and aggregated screening data, data linkage with other health databases, quality assurance activities, monitoring indicators, and evaluation practices for breast, cervical and colorectal cancer screening programmes.
 
Results
Thirty-four programmes from 26 countries responded to the survey. Most (91.2%) reported legal frameworks enabling personal invitations based on age and sex, while fewer permitted invitations tailored to screening history (67.7%) or other clinical information (55.9%). Risk-stratified invitations are implemented in 14 programmes (41.2%). A regulatory framework for systematic recording of screening activities exists in 27 programmes (79.4%), and routine central coordination of quality assurance in 22 programmes (64.7%). Use of screening data for research is permitted in 23 programmes (67.7%).
Demographic data, invitation dates, participation, and test results are available in 64.7%, 67.7%, 76.5%, and 70.5% of programmes, respectively. In contrast, data related to subsequent steps in the screening pathway are collected less frequently, including participation in diagnostic follow-up (8.8%), final pathological diagnosis (47.1%), tumour stage (23.5%), and cancer treatments (17.7%).
A screening registry regularly collecting individual level data is available in 25 programmes (73.53%), although 20 (58.8%) do not routinely link screening data with other health databases.
Only 11 programmes (32.4%) routinely collect information on opportunistic screening.
In 13 programmes (38.2%), screening data are accessible to health professionals for evaluation purposes. The most frequently reported indicators are invitation coverage and participation rate (82.4%), followed by positivity/recall rate (73.5%), participation in follow-up assessment (70.6%), and detection rate of relevant lesions (67.7%). Indicators related to clinical and therapeutic outcomes are reported less commonly. Finally, 27 programmes (79.4%) report assessing social inequalities.
 
Conclusions
While over 90% of the programmes have a legal framework allowing the use of demographics data (age and sex) for screening invitations, the use of additional information remains limited, with only 41% reporting the possibility of implementing risk-stratified invitations. Data on assessment and treatment outcomes are often not routinely available. Strengthening information systems and harmonising data collection are essential to support quality assurance efforts and to implement the EU Council recommendation on risk-stratified screening.